Monday, June 23, 2008

Update

Evan has officially made the transition from primarily crawling to moving around in an upright position most of the time. He cruises along furniture and walls (can "hop" doorways now) or uses his walker. He is becoming quite the speed demon in the walker, and does not want any help in steering from mom or dad. In fact, he will stop and try to push our hands off the walker.

In an attempt to balance his desire for independence with our need to have some way to "reel" him in, I bought a retractable dog leash to attach to the walker. Unfortunately, it really only works to keep him from getting too far ahead of us (it's not very effective at steering him in the direction we want to go). And it didn't take long for him to figure out what was holding him back. He was mad and tried to take the leash off!

Evan has also developed a recent love of the outdoors. First thing in the morning, he goes up to the back doors and tries to twist the knob open. He loves to play on the back patio and he also likes to play "tree" with daddy. Dad lifts him up to the canopy and Evan likes to put his hands on the leaves and branches. He giggles and giggles.

Grandma likes that dog leash idea! He just needs to get used to it. I can only imagine that holding Evan back is like reeling in a big one. You can call it fishing with Evan. You know Grandpa has done a lot of fishing.Love, Grandma & Grandpa

What is CHARGE???

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.